Wednesday, May 30, 2007


My post the other day got me to thinking about Noah and his progress with changes in his life. Just a few short years ago he did not handle ANY change in his routine or environment at all well. When I first put him in preschool at almost 4 years of age he had a heck of a time. He was not verbal except for mostly sounds and what we called "filler" or garbled sounds in between 1 or 2 actual words.

Because he had no easy way to express his concerns or dislikes verbally....he became extremely frustrated very very easily. This meant in most situations he would lash out physically as a response to show his displeasure about something. Obviously this is not a socially acceptable attribute and we needed to do some serious behavior modification. This...while possible....I have to tell you.....can literally take MONTHS TO YEARS sometimes to accomplish. Just to let you know up front it will not likely be something that you can change and have your child master in a few weeks.

So if a teacher made a last minute change in his schedule at school (something we tried to avoid and prepare him for in advance)...Noah would lose it. AND I mean LOSE IT. He would throw things or knock things over. Push. He loved to push. This got him into trouble a lot. He went through a short (thank goodness) period of trying to bite as well. That was a living nightmare! If the teachers could not get him to listen after 5 attempts they were to call us and we had to go pick him up. I cannot tell you the number of times we were called and had to pick him up early.

Preschool was not even an entire half day. Just shy of 3 hours I believe. We finally started picking him up early since the last part of the day...the quiet time ...he just could not handle well. I remember those days and the butterflies in my stomach every time the phone rang. I remember dreading picking him up from preschool because every day we heard nothing but negative/bad things about all the things he did wrong. It was so difficult to continue to take him back every day and put him through what seemed like a hell on earth. BUT we did. We did have to withdraw him from preschool a couple of times just to give him a break. Usually around a major holiday like Christmas. The holidays posed enough of a change in his routine and he could not handle the added stress of increased classroom activities and sounds and noises and people. I complained to the school that the teachers how discouraging it was for us to always hear nothing but the negative things Noah was doing. We rarely if ever heard anything positive. I reinforced the positives at home. I encouraged him. I worked with him. I homeschooled him even at a young age because they could not really get him to focus or cooperate long enough in school to learn something.

We taught him basic sign language so he could use that to COMMUNICATE. We also started using the PEC system (picture exchange communication) which are little photos or drawings of familiar objects and activities, usually little squares that we laminated and placed Velcro on the backside to make schedules and social stories out of. This worked very well with him at preschool. UNTIL there was a change in his schedule.

I wanted to talk about CHANGE and how disruptive that is for an autistic child. My goal with Noah was to start changing the way his felt and thought about change (brainwashing him basically or call it reprogramming his mind) into believing that change was "OKAY" and that if something were a little different on one day than the other....that it would be "FINE." My main words were always "it is OKAY" and "it is FINE!" Over and over any time there was a change in his routine and he would LOSE IT......crying....dropping to the floor bawling...half-screaming....repeating over and over how we needed to change things back or FIX it was the way it was before....I would start my drill of "it is OKAY" or "it will be fine....CHANGE is okay and will always happen and it can be a GOOD THING!" "IT IS NO BIG DEAL and NOT worth crying about!"

Noah used to go so far as if there were a change in our home environment...let's say a light bulb was burned out.....he would not be able to rest or do anything else until we changed the light bulb. He became OBSESSED about the fact that the light bulb was burned out and needed to be changed. This bothered him immensely. He would cry and cry and go on and on about how we needed to CHANGE the bulb. It was easier just to give in and do it right away to calm him and get him to settle down than it was to let it go. BUT....I realized the world he would live in one day would not always cater to his wishes...and he had to learn to DEAL with changes in his routine or environment.

SO....if a bulb went out again.....we let it out for a little longer each time....saying "that is okay...we will fix it another day" (making it NO big deal). At school if I knew ahead of time the teachers were going to change his routine prior to sending him to school we would say over and over "your routine will be different today but that is OKAY because it will be fun to do your day differently than you normally is okay!"

After countless MONTHS of this......I will never forget the day Noah finally grasped this concept and started to embrace it. One day there was a change in his routine at school and he told use about it and then said "but that is okay!"

He took it further. Any time he spilled something or made a mess or got water on his clothes which used to upset him.....he would tell me "but that is was an accident....and that is is just water" or any number of sentences to let me know.....HE KNEW IT WAS different but that it was also OKAY!

I have never forced changes on Noah but instead try to prepare him for they are just part of life and always will be.

We cannot be afraid of change...and most of us are....because if we are....we can stifle our lives tremendously and be too afraid to take that next step forward.

I watched a video clip of Noah from 2005. I cannot believe the improvements he has made in just 2 years. He talks much better...his speech has improved....he can talk in complete sentences and some of his odd behaviors just don't exist anymore.

With that being said we still have a long way to go. And again I give thanks for hope.....for progress....and even for it can be a good thing!


kristi said...

I have tried to do this for my son as well. Now he will get upset, but he will calm himself down (sometimes, not all the time) and he repeats to himself, "It's okay, it is fine. I am fine." And that is a BIG DEAL.

Melinda, mom of Noah said...

It is a big deal! Noah is able to do the same most times too though he will sometimes get upset now but nothing like before and he can work through it quicker. I am very thankful for that!